1 day ago
Tuesday, June 15, 2010
Steroids
I made it to urgent care today. Just couldnt manage to go to work, cause I cant breathe. my oxygen levels are ok but my asthma is waaay out of control flared up due to bronchitis. The doctor didnt think I have a bacterial infection, so no antibiotics but STEROIDS. wtf? I think I remember my brother having to get shots of the stuff when he would have life threatening asthma attacks as a small child. They gave me a six day course of pills. It made me think of the articles I have read about steroid treatment for women with elevated NK cell levels. Ive never been tested for this cause my docs think its a bunch of hooey. Do any of you know anything about the whole nk cell theory and why steroids might help? Im willing to practice most any sort of medical voodoo to try to carry a pregnancy to term. Although Im not going to pay for IVIG, I would do it as part of a controlled study. Sadly nobody is doing those in my neck of the woods, Dr. Mary Stephenson is doing it in Chicago, but I think right now shes focusing on IVIG for women who are having secondary rpl, or whatever they call the situation where a woman has had children, but is unable to carry again.
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Glad you got some medical care. Sorry to hear you are so unwell. I think steroids is a reasonable choice of treatment by the sounds of it. I know I was treated with a course of steroids after serious bronchitis in college. The doctor said if I didn't take them to heal properly, I could develop asthma later on. My nurse mother and pharmacist father agreed, so I went ahead and took them. No problems since. I know you already have asthma, but perhaps it can be made worse if the bronchitis doesn't heal quickly and thoroughly?
ReplyDeleteNK- don't know much about it but did get tested by the top guy in the field in Australia (originally from London). Not many medicos over here know it even exists, and I don't think I could test for it in my state. My NK test was initially a blood draw. Doc said that would give him indication of whether he then needed to go on to do uterine biopsy or not. Anyhoo, it was negative. But I'm glad I checked. I hate to think I have left any stone unturned in a search for a good reason for this rpl. Like you, I'll do what it takes. But I just have to find out what it is going to take! No answers so far. We've tested everything you can do here.
IVIG is not available to me- I think it is actually not legal here, so I don't need to consider that because it isn't an option. Unless I go overseas, which I am not prepared to do. I have to draw the line somewhere!
Not going to pretend I can explain NK treatment. Have you checked out Alan Beer's website? They can probably do a better job than me. http://repro-med.net/repro-med-site2/index.php?option=com_content&view=article&id=7:nk-assay-&catid=2:pages-ett&Itemid=70
Let me know if you decide to get tested. And good luck with your recovery - I hope you can breathe easy soon! x
Emily- My former RE thought that the NK stuff was a bunch of hooey too, but there are lots of doctors who don't. I had mine tested and it was elevated, they also did a lot more intensive blood work than what I had done before. The Scher Institute supports this, unfortunately there are only two labs in the US who do the testing. Millenova (www.millenova.com) is where my blood was sent. My insurance actually covered some of the blood tests. But you have to pay out of pocket up front. I am working with Dr. Coulam at the Rinhart Center in Chicago. She is one of the leading researchers in RPL. I cannot afford IVIG either, but intralipid therapy has shown similar results and is much more affordable and it is not a blood product. Insurance won't cover it, because it is still considered experimental. If you go with Dr. Coulam she will include you in her ongoing study but you would still need to pay for treatment. Approximately $600/infusion plus blood work and phone consults if you are not in the Chicago area. This article might help,
ReplyDeletehttp://www.inciid.org/article.php?cat=immunology&id=374 and Dr. Coulam moderates the forum on RPL and immune issues on www.inciid.org
For me more than anything I feel like I needed to have no stone left unturned before giving up. I hope you are feeling better soon.
AmyLynn
thanks panamahat & amy. It would be pretty hard for me to make it to chicago because I am in oregon. But never say never, I do have family that live within reasonable driving distance. I would just need to know more about it. Im paying out of pocket for darn near everything, anyhow. My RPL testing was covered but after a few doses of clomid my insurance pays for nada. my OB said she might have been willing to try me on lovenox for the next pregnancy, but it would cost me dearly since I dont actually have a clotting disorder. RE said no blood thinners for me.
ReplyDeleteI asked my RE about the Beers folks the first time I went in. This set him off on a tangent about how beers was a quack and never published his research. He also thinks IVIG products need to be reserved for medical things its been proven to treat. It costs thousands of dollars in the US. Ill keep doing my research though, thanks again girls.